What is a Sandal Gap? & my son’s Down syndrome diagnosis

Today I saw that a lot of people come to my blog searching for sandal gap…I mention it in Julian Thomas’ birth story about soft markers for Down syndrome.  So I decided to do some research and find out the facts about a sandal gap. What is a sandal gap you ask? It involves medial displacement of the big toe, giving rise to a greater than normal space between the first and second toes.  Like this:

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Note: This is not Julian’s foot above…I stole this from Google images.  He does have a small sandal gap…will try to get a photo of it.

A sandal gap can be considered a soft marker for Down syndrome, but only that – a soft marker. And it also occurs in the general population  Did you know that only 45% of individuals with Down syndrome have a sandal gap? Source: The Korean Radiological Society

What does a sandal gap look like on an ultrasound?

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Plantar view of the foot in a fetus with Down syndrome reveals an abnormal degree of separation between the great toe and the second toe (arrow)

Does having a sandal gap on an ultrasound definitely guarantee that my baby has Down syndrome? 

No.  Only 45% of people with Down syndrome ave a sandal gap on their feet (also according to the above referenced research report by the Korean Radiological Society). Just like epicanthal folds and short limbs, this is a variant that also occurs in individuals who do not have Down syndrome. 

If you read my beautiful baby Julian’s birth story (yes, he has Down syndrome!), I mention that the doctors found NO SOFT MARKERS for Down syndrome in the ultrasound that we had at 18 weeks.   After Julian was born and diagnosed with Down syndrome, I talked with my doctors about this because I was wondering what about the accuracy of detecting Down syndrome in ultrasounds? She answered that the accuracy rate is 30% for accurately predicting Down syndrome by just examining an ultrasound.   I was very surprised by this.

After Julian was born, I had a very hard time with the diagnosis and even went so far to admit to myself that I thought I would have terminated my pregnancy had I found out that Julian had Down syndrome. I asked myself questions like “how could they have not “caught” this on the ultrasound? I was angry. Notice that  I carefully use the words I “thought” of would have terminated the pregnancy because the reality of actually going through with terminating a pregancy is something that no one should have to go through in my opinion.  Reading my birth story will tell you that I had bonded with Julian during those 18 weeks before the detailed ultrasound. He was MY BABY.  How would I have ever gone through with just forgetting about the fact that he existed all together?

I have read some stories of women writing about their feelings about terminating their pregnancy and the grief they have felt forever afterwards.  I have known friends who struggled with miscarriage after miscarriage, people who are unable to conceive.  If you are able to conceive of a life, ANY life, I think it is important to think about what life really means to you.  And to remember that there is NO definition of a perfect child.  All individuals are perfect in their own way.  Typically developing children can develop many sorts of “imperfect things” about them as they grow up.  There is no predictions about life. No guarantees.

Look around you – there are so many different people in this world. Perhaps you don’t really “see” them. I didn’t before Julian was born.  Today, I am a different person.   I am kinder, more forgiving, more patient.  Aren’t those all qualities that everyone strives for? I can truly say that Julian coming into my life changed me dramatically for the better (despite having a very rough go of it in the beginning!)

Looking back, I realize that my views of wanting to have never brought Julian into this world come from a place of fear and ignorance.   I did not have many experiences with individuals with Down syndrome or any other type of disability, so of course I thought that I would never want to have a child with special needs.  Guess what? I have a child with special needs and it is not that different from raising a typical child.   Sure, I have my fears about his future and I don’t want this post to be too preachy (which I fear it already is) but I am here to tell you HONESTLY and TRULY about my life accepting my child’s diagnosis and accepting him for everything that he is.  He is Julian.

Looking back, I am really glad that our little Julian chose not to “tell” us about his secret super chromosomes until after he was born.  He thought that we needed a little Journey in our life – Julian’s Journey.

This is my little bundle of joy…my first born, my son – Julian Thomas Sherman. I am so proud of him. He is mine, and he is beautiful.

 

Here are some additional related resources (and blogs I love!)

Physical characteristics of Down syndome
read more at Noah’s Dad

PHOTOS of a cutie pie with Down syndrome who has a sandal gap
read more at Chronicles of Ellie Bellie Bear

Remember to follow me @Julians_Journey for updates!

I love comments and questions….

Thanks for reading!

 

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15 Responses to What is a Sandal Gap? & my son’s Down syndrome diagnosis

  1. Great post from one sandal gap mom to another :-) What a blessing that we didn’t “know” before our little guys were born. He would still be here, but I think I would’ve had a very difficult and sad pregnancy. John MIchael has opened our eyes to a whole population of people that somehow we never noticed. How wonderful to see in full color :-)

  2. Laura says:

    Ben had 3 soft markers on his 20 week ultrasound. With these markers we were given a 1 in 20 chance at him having Ds. Yes, my pregnancy was sad. The upside of finding out before, though, was that I have not been sad once since his birth. When he was born, I was ready and excited for this journey.

    I feel like I’m a different person too. I think of the moms who have terminated their pregnancy and my heart breaks for him. Ben has taught me that life isn’t meant to be perfect. And that perceived “imperfections” allow us to savor life all the more. That’s why I love this blogging community so much. An expectant mom in despair will find us and will find hope!

  3. Anna Theurer says:

    As always, a beautiful post! Thanks for linking the Chronicles of EBB :-) See you follow Noah’s Dad too :)

  4. Kenja says:

    Julian is beautiful. I know you are very proud of him.

    I am 11 weeks pregnant at 40 years old. I know I have a one in one hundred chance of having a DS baby. I’ve struggled with the question of whether or not to have CVS or neuchal testing. I’ve decided against it. It doesn’t matter to me anymore. I already love this baby. Plus, I’ve gotten to know other DS parents through blogs and like Julian, their babies are just gorgeous and melt my heart.

  5. Jenny says:

    I had three ultrasounds, my last one at around 30 weeks, and NOTHING showed up! Ever! I have to say when Russell was born and we found out he had Ds I was very angry…I mean I thought thats what an ultrasound was for, to check and see everything was alright?! I guess I mostly just felt blindsided…I hated that feeling. I felt I was scrambling all at once to learn as much as possible. It was all very overwhelming….BUT…If I had found out while pregnant, I just dont know what that initial fear and ignorance of Ds and what it was would have led me to do. So in the end I feel I found out the way I was mean to…I think we all do.
    Loved this post…And that picture of Julian is precious!

  6. Eryn says:

    Your son is SO beautiful!

  7. Sheila says:

    I actually found your site from searching for the term for the gap between the big toe and second toe, wanting to know the name for it.

    I had three ultrasounds with my pregnancy and never had a clue from them that my little girl would be born with Down syndrome. The ultrasound actually missed quite a bit. She was also born with a significant heart defect. After her birth and some ultrasounds I had later to check on some complications, I asked my doctor about the sonograms. She informed me that even the highest level ultrasounds miss about 60% of things that could be diagnosed. That is one reason she opted for an mri when I needed a closer look at my abdomen. Just thought I would share that since one of the first questions I get from people is, “Didn’t you know before she was born?” If I had know, it wouldn’t have changed things for us except perhaps being a bit more aggressive about looking for a heart defect.

    I love reading your posts and am so glad I found you through my search!

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  14. Rennea says:

    Sandal gap is not only found in Downs syndrome. I delivered a mother of 25 yesterday and she was having sandal gap, overlapping of 4th toe and a very small mouth. I am busy studying birth defects. She doesn’t have DS. Her baby doesn’t have the sandal gap. Still searching for the right syndrome for the mother. I,m so glad to know you didn’t know before birth because you shouldn’t have all those worries while expecting. Enjoy you child, because “normal ” is just another word.

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